


Living with a person with ALS

by MarUmiWrites



Category: Original Work
Genre: Gen, real story
Language: English
Status: Completed
Published: 2018-02-02
Updated: 2018-02-02
Packaged: 2019-03-12 20:36:10
Rating: Teen And Up Audiences
Warnings: No Archive Warnings Apply
Chapters: 1
Words: 844
Publisher: archiveofourown.org
Story URL: https://archiveofourown.org/works/13555110
Author URL: https://archiveofourown.org/users/MarUmiWrites/pseuds/MarUmiWrites
Summary: I didn't put any tag, besides of Real Story, because this is something that I live daily.My father has ALS, and I wrote this. I had to take it out.I'm sorry if it hurts you, but also hurted me while writing it.EDIT: My father passed away in April, 8th 2018. He passed away in peace.





	Living with a person with ALS

ALS. Amyotrophic lateral sclerosis. My father, actor, jeweler, artist, is affected by that. It's been four years since the diagnosis. He suffers a less agressive branch, but the end is the same.

 

About him, he tries to be the most positive possible, but that doesn't mean he's scared. It's something he can't control. After all, the disease won't touch his brain. Confined in a wheelchair, only able to move some fingers and his head, that's what remains of the person who he was. An actor, a writer, an artist, a jeweler, but, above all of that, a father. My father.

 

About me, I'm always scared, but no one sees it. Mostly, I don't want them to see, to not worry anyone. I was 19 years old when all started. Since then, I lived everything. How he had to stop making jewels with his hands, and had to adapt to a 3D program to make them. How, little by little, he stopped being able to walk upstairs, and then downstairs, and we needed to buy a machine to help him with that. How he couldn't do long walks, and needed an electric chair to do it, but not a wheelchair yet.

 

When the electric wheelchair entered in house, I knew that, eventually, my father wouldn't be able to walk by himself. But I wasn't prepared for it. Probably, no one is. Of course, he stayed positive even with that, but that didn't mean he wasn't scared.

 

As soon as the wheelchair entered in our lives, we had to change our car. It was 16 old, but still worked, until the day it stopped working. The new car is bigger enough to put every chair my father needs when we go to the apartment we have in the mountains. It's a place that always made me feel better, isolated from everything. Not even internet in the building. We have to take our own every time we go there.

 

A year and a half ago, more or less, my father stopped being able to pilot his wheelchair, and we disconnected everything related to it form the wheelchair. Wasn't a big thing, just a battery connected to a joystick, and the motor was on the wheels.

 

Last year, on January, something we didn't want to come even less than the wheelchair came. An ambulance had to came home and take my father to the hospital. He was there for near a month, if I don't remember bad. Whne he came back, he needed a machine that concentrated the oxygen in the air and gave it to him. For sleeping, one that helped him to breath. But, as months passed, he needed more help to breath, and the machine that was helping him became the normality at home.

 

In that time, my father already needed help to feed himself. My mother always helps him, and me and my sister help her. We take him to the bathroom, we bath him, we take him out of home,... We do all we can do to help... We can't do much more...

 

There is some medication he takes, but it only slows ALS. The pill that slows ALS, the pill to make his stomach work, the one that doesn't let his muscles seize, the one against depression, the laxative,... Well, the laxative only when it's needed.

 

Recently, we have to triture some of his foods, and thicken all his drinks. Sometimes, he chokes with food, and it's when we have to triture it. Also, he can't hold up his head if it falls.

 

He uses his computer using a light detector and a refractor in his glasses. He explains how the disease takes his body through posts in Facebook, explaining things that happened to him, exaggerating them a little. He also made political resumes. Recently, he published a novel that abandoned when everything started, but my mother convinced him to finish it.

 

During this four years, we did all we could with him. Travel, some jewerly expositions, theater when he still could walk, short movies for a contest. Yes, I said jewerly expositions. He wasn't a conventional jeweler, he was an artist. But only certain places accepted to make expositions of his jewerly. A lot of art places said that jewels don't go to art places, and a lot of jewerlies told us that his jewerly was art and they couldn't have it. But that didn't meant he didn't keep trying to search places.

 

I know he probably won't be there when me and my sister get married, and that he will never see his grandkids, but he's my father, and I want him to stay with us as much as possible. But, at the same time, I'm scared, because I don't know in which state will he live, or how much. I don't know in which moment will he leave this world, and that scares me the most.

 

I have to stop writing. Forgive me for all the mistakes in my writing, but I've been crying all the way writing this.


End file.
